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'Wrongful Birth' and Early Testing

A mother who gave birth to a severely handicapped child has sued her obstetrician for not providing data that would have allowed her to abort the fetus. Elizabeth Weil wrote about the case in The New York Times Magazine.

27:16

Other segments from the episode on March 16, 2006

Fresh Air with Terry Gross, March 16, 2006: Interview with Aaron Eckhart; Interview with Elizabeth Weil.

Transcript

DATE March 16, 2006 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Interview: Aaron Eckhart discusses his new movie, his childhood
and his college experience at BYU
TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

My guest Aaron Eckhart stars in the new satirical film, "Thank You For
Smoking," based on the novel by Christopher Buckley. Eckhart is best known
for his role in "Erin Brockovich" as Brockovich's boyfriend, and for the four
movies that he made with screenwriter and director Neil LaBute, "In the
Company of Men," "Your Friends and Neighbors," "Nurse Betty" and "Possession."
"In the Company of Men" put Eckhart on the map. He played an office worker
who was dumped by a woman and becomes angry with all women. He cooks up a
scheme to get even by setting up a woman and dumping her. In this scene in a
bar, he proposes his plan to a friend who was also dumped by a woman. He
says, `I know we're busy, but say we find some gal.'

(Soundbite from "In the Company of Men")

Mr. AARON ECKHART: (As Chad) For the sake of argument, let's say we stumble
on some, OK. And this person's just vulnerable as hell. You know, young
thing, wallflower type or whatever.

Mr. MATT MALLOY: (As Howard) You mean like...

Mr. ECKHART: (As Chad) Disfigured in some way. I don't know. But just some
woman who is pretty sure that life, and I mean a full, healthy sexual life,
romance, stuff like that, has just lost her forever. OK? And now we take a
girl that type, and we both hit her. You know, small talk, a dinner date,
flowers, no pushing it, not all in her glass the first night out. But it's
like taking her out to a, you know, seeing an ice show. Something like that.
We just do it, you know. You and me. Upping the ante all the time. And
suddenly she's got two men. She's calling her mom. She's wearing make-up
again. And on we play. And on and on. And then one day, out goes the rug
and us pulling it hard. And Jill, she just comes tumbling after.

(End of soundbite)

GROSS: Aaron Eckhart has gone on to play several other characters who use
their verbal gifts for devious or manipulative ends. Perhaps none as funny as
his character in his new film, "Thank You For Smoking." He plays Nick Naylor,
America's top tobacco lobbyist who has been nicknamed the Sultan of Spin. In
this scene, he's a guest on Joan Lunden's TV show along with several smoking
opponents and a boy named Robin who has been battling lung cancer. One of the
panelists accuses the tobacco industry of trying to kill this boy. Here's
Nick's response...

(Soundbite from "Thank You For Smoking")

Mr. ECKHART: (As Nick) How on earth would big tobacco profit off of the loss
of this young man? Now, I hate to think in such callous terms, but if
anything, we'd be losing a customer. It's not only our hope, it's in our best
interest to keep Robin alive and smoking.

Ms. JOAN LUNDEN: (As herself) That's ludicrous.

Mr. ECKHART: (As Nick) Let me tell you something, Joan. And, please, let me
share something with the fine, concerned people in the audience today. The
Ron Goodes of this world want the Robin Willigers to die. You know why? It's
so that their budgets will go up. This is nothing less than trafficking in
human misery, and you, sir, ought to be ashamed of yourself.

Unidentified Actor: I ought to be ashamed of myself?

Mr. ECKHART: (As Nick) As a matter of fact, we're about to launch a $50
million campaign aimed at persuading kids not to smoke, because I think that
we can all agree that there is nothing more important than America's children.

(End of soundbite)

GROSS: That's a scene from "Thank You For Smoking."

Aaron Eckhart, welcome to FRESH AIR. The tobacco lobbyist that you play comes
up with some really incredible ways of spinning the health hazards of smoking.
Do you have a favorite besides the one that we just heard?

Mr. ECKHART: I think my ultimate favorite is in the classroom when I, on a
parent/teacher where the fathers come in to tell the kids what they do for a
living, there's firemen, kids bring in their dads who are doctors. And I come
in as a tobacco lobbyist and tell the class basically to keep an open mind
about cigarettes. I really enjoy that scene because it really shows my
character and everything he does and how much fun he has selling cigarettes.

GROSS: Do you smoke in "Thank You For Smoking"? I don't...

Mr. ECKHART: Nobody does.

GROSS: You're supposed to be a smoker in it, but...

Mr. ECKHART: Yes.

GROSS: ...I don't think we see you smoking.

Mr. ECKHART: No. I think John Wayne, there's a clip with him in the film,
and he almost gets a cigarette to his lips, and then he's shot dead. That was
another thing that Jason was conscious of. He, A, didn't want to be a
proponent of cigarettes or an advocate, and he wanted people to come away from
the movie thinking, well, although this takes place in the milieu of
Washington, DC, and around tobacco, it's not a film about tobacco. It's a
film about a man who loves to talk.

GROSS: You made four films that were written and directed by Neil LaBute, "In
the Company of Men," "Your Friends and Neighbors," "Nurse Betty" and
"Possession." Now the first two films I mentioned are two of the most, like,
misogynistic films, and I should say misanthropic films. It's not just women
who these characters hate. You know, the most misanthropic films I've seen,
so is there anything in the characters that you recognize?

Let's start with "In the Company of Men." I mean, this is a guy, your
character. He and his friend have been basically jilted by girlfriends, so in
retribution, his plan is to find a young woman who is very vulnerable and who
probably wants but hasn't really had romance in her life, who maybe has some
kind of disfigurement that makes her really insecure and more vulnerable. And
he wants both of the guys, he and his friend, to pretend that they love her.
And then dump her. Just to play with her and see what happens. How do you
feel about playing a character like that?

Mr. ECKHART: Well, can I be--I'll be a little bit multipersonality here.

GROSS: OK.

Mr. ECKHART: As an actor, in New York, with no film work trying to get a
job--and I'm not--this is not me being a victim or this is not me saying I had
to do it because I wanted to do it. As an actor, given those words, I
couldn't have had a bigger blessing. I mean, to just say the words on film
and just to rehearse those words, it was a dream. Now the film's plot is a
little bit more hard to swallow. I went to college with Neil, and I had done
several of his plays, so it was not shocking when I read this. I, in fact,
did the play "In the Company of Men" in college, in which I played the Howard
part. So in the movie, I played Chad. In the play, I played Howard.

GROSS: So in the movie, you played the guy who initiates this scheme.

Mr. ECKHART: Exactly.

GROSS: In the play, you played the guy who is his kind of friend who goes
along with it and gets...

Mr. ECKHART: Right. His co-worker. Yes.

GROSS: And he gets, what's the right word to use, most polite word to use
here. He gets...

Mr. ECKHART: He gets suckered.

GROSS: Thank you.

Mr. ECKHART: Yeah. Yeah.

GROSS: Another word I was thinking of.

Mr. ECKHART: I know what you were going to say. Right. So it wasn't new to
me. I was out of work. I was happy to do it. Nobody thought that this film
was going to see the light of day. We made it for $25,000. It just didn't
have a chance. I had a lot of fun making it, and Matt Malloy, who played
Howard in the film, and I just would for days and days and days just sit there
and say the words to each other. Which was a blast for an actor. I mean,
it's so beautiful because Neil writes so beautifully. He really has a
pentameter. Every word is chosen. I mean, he really agonizes over his words.
And for an actor, again, that's great because they mean something. They're
not arbitrary. When words in scripts start getting arbitrary, then you lose
respect for the material that you're doing. That's why Neil's so special.
His subject matter, you know, you just have to decide whether or not you're
willing to do it. And because it is drama, because drama is about conflict
and tension and we felt like it was worthwhile, I feel pretty good about it.

GROSS: You met the playwright Neil LaBute when you were both attending
Brigham Young University. Actually, I think he was teaching there.

Mr. ECKHART: He was a PhD student, so he had teaching responsibilities, and
I was getting my undergrad.

GROSS: And it's funny, I think, that one of the most misanthropic plays in
recent memory was created at a university that's predominantly Mormon. That
strikes me as paradoxical.

Mr. ECKHART: Well, yeah, again, it's a little irony. And I'm sure BYU's got
to be 97 percent Mormon. I mean, you know...

GROSS: Brigham Young University. Yeah.

Mr. ECKHART: Yeah. You know, I think he converted or his parents did, and
my parents converted. So I grew up Mormon and, yeah. It's one of those
things. When we would do plays there, you know, they would lock the theater.
So they would take away the light board and we'd be scheduled to have a run,
you know, at 6:00 or 7:00 for a week, and Neil would call me up, literally
after rehearsing for three months, and be like, `We can't do it.' We have to
do it at 8:00 in the morning, and tell all your friends. So we'd kind of do
this commando one-time theater performance, which was fun. I don't know why.
It's not that we have a venomous hatred for the school or anything. I had a
great time there, and I really, you know, hold up my upbringing--I mean, I
cherish it. You know, I have nothing bad to say. It's just that I think Neil
and I somehow have a little bit of a darker outlook or a little bit more
twisted psychology.

GROSS: So they tried to lock you out of the theaters so you couldn't perform
or rehearse?

Mr. ECKHART: Yeah. Perform, yeah. I think that the faculty got wind of it.
See, the thing about Brigham Young was that, and Neil was getting his theater
PhD, and I was getting a film and theater undergrad degree, BFA, and they
didn't like what Neil was writing. But they couldn't deny that it was great.
You know, and so they were ambivalent about it because, you know, when you're
a--I don't like to use the word "artist," but if you're a creative person and
you cherish words and literature and plays and stuff like that, and then you
read something that maybe, you know, isn't quite your cup of tea, but you have
to recognize that it's really, really good, and the guy who wrote it is
really, really talented, you might want to foster that talent.

So some of the faculty, they were divided because, you know, at one point,
they said, `Well, we can't put this up as a representation of, you know, who
we are as a theater major, but on the other hand, this guy's talented and we
really want to show his work.' So they would talk to Neil about it and ask him
maybe to write other things. But he didn't really have any interest in that.
And I, you know, didn't do "Harvey," so I did Neil's work. You know, I think
our play was going on at the same time as "Harvey."

GROSS: It was about the giant rabbit?

Mr. ECKHART: Yeah.

GROSS: Yeah. So I guess you chose the one that was more temperamental.

Mr. ECKHART: Yeah.

GROSS: Temperamentally suited to you.

Mr. ECKHART: Yeah. Yeah.

GROSS: Now I read you took a film ethics class from Neil LaBute. What are
film ethics?

Mr. ECKHART: Well, and that's probably what UCLA probably doesn't have, you
know, because of the subject matter, because of, you know, films are often
rated R, and some of the best films are rated R, especially when you're going
to film school and you can't see "The Godfather." Like they won't show it.
So, you know...

GROSS: They wouldn't show it on campus?

Mr. ECKHART: No. Uh-uh. No. Not in film school. You know. You mostly
concentrated on the older films or whatever. I mean, the thing about...

GROSS: Well, would they not show it at Brigham Young because of language and
violence or?

Mr. ECKHART: Yeah. I think so. Subject matter. Or if something had
nudity. I think they cut films, you know. A film has to agree to be cut to
go there to show on campus. But...

GROSS: So you were talking about film ethics class.

Mr. ECKHART: Oh, film ethics. That's right. Yeah. Neil taught that, and
I'm sure it's the only class of its kind around, but Neil created quite a stir
because he would read his material in class. Oh, my gosh! And literally
people would just be like, their mouth would be open. I can just see it right
now. And Neil would just not give anything to them. And it was like he was
manipulating us. He's playing a game with us. He would just put it out
there. People would go crazy. I would just sort of sit back and laugh
because I knew what was going on, but, you know, people get very upset.

I mean, think about it. It's not so different than saying is it morally right
or wrong to show cigarette smoking in movies? Brigham Young, or our film
ethics, basically, was saying, `Do we have a responsibility to be optimistic
or hopeful or to show, you know, certain characteristics in film?' It's
basically the same thing because on movie sets today, you're saying, `Well,
look. We have a responsibility not to show smoking because kids are going to
think it's cool and then they're going to start smoking.' So, again, it's
pretty prevalent out there, this whole kind of ethics in film. It's just that
this was a class.

GROSS: My guest is Aaron Eckhart. He stars in the new satirical film, "Thank
You For Smoking." We'll talk more after a break. This is FRESH AIR.

(Announcements)

GROSS: My guest is Aaron Eckhart. He stars in the new satirical film, "Thank
You For Smoking," and he's been in four films by Neil LaBute, "In the Company
of Men," "Friends and Neighbors," "Nurse Betty" and "Possession." When we left
off, we were talking about studying with and working with LaBute at Brigham
Young University.

Are you still a Mormon?

Mr. ECKHART: I--you know, it's once is, always is. I have my relationship
with it and do my things. I haven't--let's put it this way. Neil and I
haven't been asked back to the school to speak. I think, you know, except
for, I think, "Napoleon Dynamite," I think that we're probably the most
well-known filmmakers that have come out of school, BYU, and yet we have not
been asked back.

GROSS: You didn't grow up in Salt Lake, right?

Mr. ECKHART: No. I grew up in Northern California, and then I moved abroad.

GROSS: So you grew up in communities where Mormons were not the majority of
the population...

Mr. ECKHART: No.

GROSS: ...as they are at Brigham Young.

Mr. ECKHART: Not at all.

GROSS: So that must have been a big change for you and probably also made you
think about the whole faith differently?

Mr. ECKHART: Well, I certainly had a different relationship with it than
people who grew up in Salt Lake. I mean, to me, it just didn't--it was
different because none of my friends were Mormon, the whole community didn't
revolve around that. Just didn't--I had no concept of that. When I moved to
Salt Lake, it's definitely--to go to school, I did my high school in England.
And if you're talking about shrinking communities of Mormons, there's not a
whole lot. There are some there, and then I traveled to Australia, I went
there. But they're good people, and they have really very strong communities
and family values which I do cherish and have helped me out greatly as I grow
older.

GROSS: In your movies, you're almost always playing really attractive men.
And I wonder what your self-image was physically when you were growing up?

Mr. ECKHART: I was pretty athletic. In fact, very. I loved sports. I
always felt like I was--you know, I never had issues of not being accepted. I
was very shy when I was growing up, and so if I had any--gosh, I mean, if I
had any problems, it would be through shyness. It's like I would go over to
people's houses, and I couldn't speak, you know. Or I really couldn't even
ask for a drink. I was just very, very shy. You know, I thought I was
reasonably cool kid, you know.

My mother's mother is a poet and she was a schoolteacher and a writer. My
mother is a writer and a poet. And I feel like I got it from them. Drama
just seemed like a natural progression for me. So it wasn't like I was Owen
Meany, from a John Irving's novel. I wasn't kind of this kid locked up in the
house. I was out there, doing stuff. I had a very full life. I had, you
know, my little girlfriends, and I had my little rock bands, and you know,
doing all that sort of stuff. I think when I moved to England, when I was 13,
that really for me started, because it was very scary for me to move to
England with my family.

I came home from camp one day, and my dad called a family meeting. And he
said, `We're moving to England.' And, you know, I was just going into junior
high, I was just getting into girls, and all this and surfing, and it just
blew us away. My little brother and I moved to England for four years. And I
think it was there that I kind of got really introverted, and I kind of got in
touch with my creative side and my imagination because I really had to fend
for myself for a long time. And that's when I got interested in drama.

GROSS: Wait. When you said that you went through a period where you were too
shy to ask for a drink if you were in somebody's home, like, how difficult was
it for you to speak? How untalkative were you?

Mr. ECKHART: Well, for example, you know, we would visit my aunt, and my
aunt, at the time, this is how old I am, but my aunt loved Tab. So she had a
refrigerator full of Tab, and I just couldn't ask for one. I'd have to
whisper in my mom's ear, I'd say `Can I have another Tab?' Or `Can I go to the
bathroom?' I mean, this is my aunt's house. And, you know, I look back on it
now, I make a point of it if I'm in somebody's house just to go open up the
refrigerator just because I just don't want that to happen to me again, you
know. I make myself at home. But I didn't like it as a kid. It was very
difficult because I could never really relax and settle down. And I always
felt like I was imposing on whoever's house I was at, and I didn't like that
at all.

GROSS: Do you have children?

Mr. ECKHART: None. I just had a birthday yesterday, too.

GROSS: How old?

Mr. ECKHART: Thirty eight, 38, so I got to get kicking.

GROSS: You want to have children?

Mr. ECKHART: I want to have some kids.

GROSS: Better hurry up?

Mr. ECKHART: Yeah. Yeah.

GROSS: OK.

Mr. ECKHART: I'm not going to actually bear them, but...

GROSS: I knew that.

Mr. ECKHART: So. Yeah. No, but I feel like, you know, I don't want to be
too old before I have children.

GROSS: Right. Well, the only reason why I ask is because I was wondering,
you know, having gone to college and not being able to see certain movies and
then having made exactly the kind of movie you wouldn't be able to see, what
kind of rules you were going to set for your own children about what they
could see and not.

Mr. ECKHART: That's an interesting question. I think about that a lot. I
think that I will be more lenient, I would say. I think that I will instill
values, but I think that I'll give a little bit more background as to why I
believe in these values and allow for a little bit more experimentation. I'll
certainly be more involved with the experience of whatever my child's going
through.

GROSS: Well, Aaron Eckhart, thank you so much for talking with us.

Mr. ECKHART: My pleasure. Thanks for having me.

GROSS: Aaron Eckhart is starring in the new film "Thank You For Smoking."

I'm Terry Gross, and this is FRESH AIR.

(Announcements)

GROSS: Coming up, is there such a thing as a wrongful birth? We talk to
Elizabeth Weil. Her recent article in The New York Times magazine profiles a
mother who gave birth to a severely handicapped child. She later sued her
doctor for not detecting the problem early enough to give her the option of
aborting the pregnancy.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Interview: Journalist Elizabeth Weil discusses her recent article
"A Wrongful Birth?" and her personal connection to the story
TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

In an article titled "A Wrongful Birth?" question mark, Elizabeth Weil says
recent lawsuits shed an uncomfortable light on contemporary expectations about
child-bearing and how much control we believe we should have over the babies
we give birth to. Her article was published in last Sunday's New York Times
magazine. This is a story that has a personal connection for Weil. The
article focuses on a lawsuit.

Could you describe the lawsuit that you've written about?

Ms. ELIZABETH WEIL (Author, "A Wrongful Birth?"): Yes. It was technically a
medical malpractice lawsuit. In other states, that might have been called
wrongful birth lawsuit. And it was brought by Anthony and Donna Branca
following the birth of their son, AJ. And AJ was born severely disabled, and
they did not know this was to be the case prior to his birth. And they felt
that the prenatal care that they had received was substandard. And so they
sued their doctor.

GROSS: What are some of the signs they think that the obstetrician should
have noticed and didn't?

Ms. WEIL: Well, there are several things that were unusual about Donna's
pregnancy. She had some bleeding during her first trimester, which was not
alarming but can be an indication of chromosomal defects. And at her midterm
sonogram, at about halfway through her pregnancy when she went in to have her
fetus measured and checked for all kinds of things, the fetus appeared smaller
than the doctors expected it would have based on when they originally thought
she had conceived, and this should also have raised some concerns for further
testing. And Donna also never gained much weight. And while none of these
things alone would have been a crisis, put together, they really should have
brought some more testing.

GROSS: At what point did she find out that her baby had serious problems?

Ms. WEIL: It was shortly before she gave birth. When she was 31-week
pregnant while she was on vacation with her family, she started having severe
bleeding and went to an emergency room. And it was at this point that a
doctor finally measured her belly and measured what was called her fundal
height. Basically, they just take a tape measure across your swollen tummy to
get a rough estimate of how big the fetus is in there. And when the doctor
did that, his estimation was this looks like a 24-week-old fetus instead of a
31-week-old fetus, which was rather alarming, and he had major concerns and,
in fact, asked Donna if she'd had any prenatal care at all. And this led to a
whole series of tests, including a sonogram to confirm that the fetus was
abnormally small and then an amniocenteses, which showed that the baby had
both a gene duplication and a gene deletion on the fourth chromosome.

GROSS: So, by the time she found out that her baby was likely to have
profound problems, it was too late to have an abortion if she had decided to
have one.

Ms. WEIL: Yes. A woman can choose to terminate a pregnancy for whatever
reason up until 24 weeks of pregnancy, up until she begins her third
trimester. So Donna was 31 weeks pregnant, and that was no longer an option.

GROSS: So what condition was the baby in when he was born?

Ms. WEIL: The baby was born quite small. He weighed two and a half pounds
and was 15 inches long. He didn't cry when he came out, which is always a bad
sign. And he had a whole host of problems. He had real difficulty eating.
He had seizure disorders. He had difficulty regulating his body temperature.
And this, of course, sent the Brancas through endless tests and 17 weeks in
hospital. And the baby was eventually diagnosed with Wolf-Hirschhorn
syndrome, which is a very rare condition. But the features of it include
seizures and heart problems and a shorter-than-expected life span, and most of
the children who have it never learn to speak. Some do eventually learn to
walk.

GROSS: Tell us something about what AJ's life is like now and what condition
he's in.

Ms. WEIL: Sure. AJ now lives at the Center for Discovery in New York state.
He's six years old. He's about the size of a three-year-old. He has two
three-year-old siblings who are twins, and he has the mental capacity of a
six-month-old. He has a favorite toy. It's a LeapFrog infant piano that he
plays with all day long, and he spends a lot of time in his wheelchair,
although he has very extensive physical therapy, and last summer he learned
how to belly-crawl which was a major achievement for him. And he seems
placid. He doesn't seem frustrated as some handicapped children do. But, you
know, he has very serious defects.

GROSS: What are the Brancas asking for in their lawsuit?

Ms. WEIL: The Brancas were asking for compensation for the expense of
raising their child. Some states allow parents to sue for emotional damages
for having a handicapped child that they did not expect to have. New York is
not one of those states. And that is where they live. So they sued for money
for AJ's care. And they also told me privately, and this wasn't the legally
stated reason why they sued, but they both said to me that they thought they
might not have brought the suit at all if Donna's doctors had just apologized
to them and said, `I'm sorry this happened to you.'

GROSS: You know, at the same time that the Brancas are suing the
obstetrician, you say they love AJ deeply.

Ms. WEIL: Yes, and that's part of what's so interesting to me about this
issue and about this case. The Brancas clearly love their son. Their love
for him is palpable and it's daily. You know, AJ's father Anthony spent years
sleeping in the same room with AJ when he was home waking up countless times
every night to feed him. In fact, he told me a funny story that he was doing
everything by the book. You know, if he was supposed to get his medications,
one at 2 and one at 3 and one at 4, he would wake up every hour to give them
to him. And then when the nurse started coming at night, he realized that the
nurse would sort of cheat and lump them all together. But he had a parent's
diligence and also fear, and so was doing everything strictly by the book. So
their love for him is not something that they question, although they do
really feel that they received substandard prenatal care and that they should
have been given the choice about whether to go forward with this pregnancy or
not. And because of the care they received, they were deprived of that
choice.

GROSS: So what did they win in the lawsuit?

Ms. WEIL: They won a large settlement that is put away in a trust for AJ,
and it's really improved their quality of life. So now, for instance, when AJ
comes home, a nurse comes with him. They're also, you know, planning to take
a family trip to Disneyland with--and that will mean bringing a nurse along,
also, so that they can all have time to enjoy themselves. They have two other
young children who need their care also. And I think it means both that they
can move forward in some sense, and not just financially, that there was some
recompense for what happened to them.

GROSS: Well, I think it also gets to that if you have a child who is
seriously physically and emotionally impaired, then it sure helps if you have
the money to pay for care. And, you know...

Ms. WEIL: Absolutely.

GROSS: ...there's just a really big rift between having to do it all yourself
and having some medical help. I mean, the Brancas' child is in a home, isn't
he?

Ms. WEIL: Yes.

GROSS: So, I mean, that costs a lot of money.

Ms. WEIL: Yes. It all costs a lot of money, and as they were telling me,
even incredibly simple things cost a lot of money. You know, even getting a
kind of chair, a tumbleform chair that AJ can sit in so he can join them at
the dinner table. It's hundreds of dollars. You know, getting a shower chair
so that he can shower at their home is incredibly expensive. That all of
these things place a very large burden on families.

GROSS: What are the larger issues you think this case and similar cases
raise?

Ms. WEIL: It raises a lot of very complicated issues for us. The major one
is should we be able to decide to terminate a specific pregnancy and on what
grounds? And by that I mean these days a pregnant woman is offered many
genetic tests, and they're for all sorts of diseases. And many, many more
genetic tests are possible and on the horizon. And which of those tests
should be actionable? Should a mother be able to decide that she doesn't want
to give birth to a baby who will get a disease like Huntington's later in
life? Should a mother decide she doesn't want to give birth to a baby who
would be blind? They raise all sorts of issues. You know, right now, the
most common reason to terminate a pregnancy after a genetic test is for Down's
syndrome, and there is some comfort level in the country right now with that.
But there are many more questions that suits like this raise.

GROSS: You write that the ethics of selective abortion are being hashed out
in the courts through wrongful birth and wrongful life lawsuits. What's the
difference between wrongful birth and wrongful life lawsuits?

Ms. WEIL: A wrongful birth lawsuit is brought by the parents against the
doctors saying, `We feel that we received substandard prenatal care and we
wish we had been given the information and the choice to decide to terminate
this pregnancy.' A wrongful life lawsuit is actually brought by the child,
claiming in essence, `I wish I hadn't been born. I wish that you had given my
parents the information to decide not to bring me into this world.' And those
lawsuits are much more controversial, and they're also legal in many fewer
states.

GROSS: My guest is Elizabeth Weil. Her article, "A Wrongful Birth?" was
published in last Sunday's New York Times magazine. We'll hear about her
personal connection to this story after a break. This is FRESH AIR.

(Announcements)

GROSS: My guest is Elizabeth Weil. In last Sunday's New York Times magazine
she wrote an article about a couple who sued their obstetrician for not having
done adequate prenatal testing to determine their fetus was severely
handicapped, thereby depriving them of the option of abortion.

You have a personal connection to this story that you wrote about. You had a
sonogram when you were five months pregnant with your second child. What were
you told after your five-month sonogram?

Ms. WEIL: Well, when I went in for a five-month sonogram, the first thing I
was told was that I needed to come back, that I have a very large HMO that is
very careful with these things. And I knew when they were doing the sonogram
that they were having what I thought was difficulty seeing the fetus' bowels.
And so I had actually gone from the sonogram off on a work trip, and when I
was in the airport on my way home, I got a message saying, `We need you to
come back. We're concerned that we see some spots on the bowels.' It's called
an echogenic bowel, and they're bright white spots that look like there's
bone. And so I went back, and when I went back in for a follow-up sonogram,
this time, there appeared to be all sorts of small anomalies. The fetus'
liver seemed too big. There seems to be some spots on the baby's brain. The
bowel still did not look right. And this, of course, sent my family into just
a spiral of bad news.

GROSS: Was there a diagnosis?

Ms. WEIL: There was a diagnosis, but it took several weeks. I was
eventually diagnosed with having a CMV or cytomegalovirus infection, which in
and of itself is not harmful and in fact incredibly common. Over half of the
adults in the United States over 40 have had this virus, and most people never
even know they've had it. It's like having a common cold. Or some people
feel tired or feel like they have mono. It's only dangerous if a woman gets
it for the first time when she's pregnant. And so I had gotten this virus,
apparently, for the first time when I was pregnant and had passed the virus
along to the fetus. And if the virus is passed along to the fetus, then there
can be really quite dire effects. We were told that the baby I was carrying
would almost certainly be deaf, almost certainly be blind and probably have
very severe mental retardation.

GROSS: How did you go about deciding? You ended up having an abortion, but
how did you go about deciding whether you wanted to do that or not?

Ms. WEIL: It was really an awful process, and part of what was so awful was
the uncertainty. What we had was not like having a genetic condition where
someone can say for sure `This is what's going on with your fetus, and this is
what that baby's quality of life will be like.' We were just told that these
things were very, very likely, though it was possible we would have a healthy
baby. And that was maddening. And so my husband is also a journalist, and
being who we are, we both, you know, dove into doing tons and tons of
research, you know, assuming that if we researched enough, we would get to
really firm ground with it. But we never did. We just kept hearing the same
thing, `It's very, very likely your baby will be born in this extremely
impaired condition.' So, you know, I can't say that there was one moment when
it became clear that we were going to terminate the pregnancy. It was just
something that I think came to feel like the right thing to both of us slowly.
Though very painfully.

GROSS: Did you have any ethical reservations about it?

Ms. WEIL: You know, I fear like I'm going to sound like a terrible person,
but I didn't. I had lots of fears of feeling endless sadness about the
decision, but I didn't feel it was unethical.

GROSS: And can you talk a little bit about why you didn't think it was
unethical?

Ms. WEIL: I guess I very much believe that these are decisions to be made by
families and that the fetus I was carrying was not yet a person with the same
rights and privileges that I had or my husband had. At that point, we also
had a two-year-old daughter, and I had very big fears about what bringing that
baby into the world would mean for the rest of my family.

GROSS: Although you decided to have an abortion, you continue to mourn for
the baby that you lost.

Ms. WEIL: Yes. Before we found out that the baby had CMV, we found out that
he was a boy. And interestingly that set off, you know, there was a very
brief window in which we knew the baby was a boy, but we didn't know he was
sick. And it was just a few days, and in those few days, you know, a whole
fantasy life of hopes for what this child would be emerged, particularly for
my husband. He was just ecstatic in the sonogram room and called his father
to talk about, you know, all the great rock-climbing adventures they were
going to have, and all together with this son. And that's been much, much
harder to let go of than either of us imagined it would be. You know, I have
a daughter who's now three and also a baby who's 10 months, and shortly after
the baby was born, my older daughter started asking me, where babies were
before they were born? And so, you know, she said, `Mom, you know, where was
I before I was born?' And I was sort of at a loss for words. But I told her
she was floating around up in the sky. And then she said, `Well, was
Audrey--Audrey's her baby sister--was Audrey with me?' And I said, `Yeah.
Audrey was with you.' And you know, she got this smile that was just sort of,
the world all made sense and felt all put together for her. But somehow in
telling her that, I had this vision of this boy that we didn't have being with
them, which is just heartbreaking to me. And so that baby is really present
in our lives in these unexpected ways. And I imagine that baby will stay
there for quite a long time.

GROSS: After you had your abortion, how long did you wait before trying to
get pregnant again, and were you afraid to get pregnant again?

Ms. WEIL: Well, we had a few complications which were unexpected after we
had the abortion. But my very strong desire was to get pregnant again right
away. I was deeply, deeply upset by the loss of that baby and felt that the
only way to get back on my feet was to get pregnant again. And I wound up
getting pregnant again about four months later.

GROSS: And were you worried during the pregnancy that, after the five-month
sonogram, they'd find what they found before?

Ms. WEIL: Oh, I was terrified. And I found myself not letting myself
believe in the pregnancy at all until we'd sort of, you know, gotten the clean
bill of health. And I think that that's a very common experience for women
who've lost pregnancies for all sorts of reasons, including just having a
natural miscarriage that you don't want to let your heart start hoping for the
future you're going to have with that child until you've gotten past the point
where you lost the previous pregnancy.

GROSS: My guest is Elizabeth Weil. Her article, "A Wrongful Birth?" was
published in last Sunday's New York Times magazine. We'll talk more after a
break. This is FRESH AIR.

(Announcements)

GROSS: My guest is journalist Elizabeth Weil. Her article, "A Wrongful
Birth?" question mark, was published in last Sunday's New York Times magazine.

I want to get back to the wrongful birth lawsuits that have been filed. And
these are suits that people file against doctors for not having informed them
that the baby that the woman was carrying had serious developmental
impairments. You write that you think these lawsuits may bias the system
toward termination of the pregnancy. Why?

Ms. WEIL: Well, you know, there's a lot of fear of litigation in general,
and I spoke with quite a few people about this matter. And there's a fear
that the very presence of the test suggests that these diseases are something
that you do not want to have. You know, we don't test for things that we all
consider to be OK. And so if there is a test for Down's or a prenatal test
for Down's or there is a prenatal test for cystic fibrosis, or there is a
prenatal test for fragile X, suggest that perhaps you don't want to have this
baby, and then I think the medical establishment sort of incorporates that.
Then there are subtle ways, it seems, in which the system tries to shepherd
parents towards not having this baby.

GROSS: The Republican Senator Sam Brownback and Democratic Senator Ted
Kennedy have sponsored a bill that relates to what you're talking about. It's
called the Prenatally Diagnosed Conditions Awareness Act. Would you explain
the intention of this bill?

Ms. WEIL: Yes. The intention of the bill is to give parents more positive
information about what living with a disabled child would be like. And there
are actually a lot of studies out there that show that raising an impaired
child is on the whole a lot less different from raising a so-called normal
child than a lot of us imagine it will be. And so right now, often when a
woman goes in for an amniocenteses to find out, you know, if there are genetic
defects with her baby, she's given a very clinical picture of what Down's
syndrome is and how that is defective. So the intent is to give prospective
parents a much more balanced and positive outlook on what it's like to raise
disabled children.

GROSS: You know, what I was wondering among other things while reading your
article, I know that a lot of people strenuously object to the idea of
terminating a pregnancy because a sonogram or another test indicated that the
baby would have impairments, serious impairments. At the same time, I think a
lot of the babies who are so seriously impaired would never have survived a
few years ago before the kind of medical interventions that we have now.

Ms. WEIL: Right.

GROSS: I mean, for example, the Brancas' baby, AJ--I mean, there was like,
what did you say? Seventeen weeks of major medical interventions...

Ms. WEIL: Right.

GROSS: ...to keep the baby alive. It was born at two and a half pounds, it
had difficulty eating. Seizures and heart trouble are typical problems that
come with the condition this baby had. It's, I think, probably very unlikely
the baby would have survived in an era before abortion. I mean, before
abortion was medically available, it's unlikely the baby would have been able
to survive.

Ms. WEIL: Right. It's very complicated. Yes, these babies are born into,
you know, a world of NICUs, you know, neonatal intensive care units, and
really sophisticated medicine to keep them alive and, you know, generations
ago, of course, a lot of these children would have just passed early on in
life. So we're at a moment that's very complicated, and it's comparable in
many ways to end-of-life issues where people are being kept alive and others
are arguing that perhaps they, too, should pass on.

GROSS: Has doing the research for the article we've been discussing and
writing about the Branca family--has it made you think any differently than
you thought before about your own decision to have an abortion?

Ms. WEIL: Yes. You know, the research along the way was very painful, and
also very eye-opening. I spoke to a lot of people in the disability rights
field who had a lot of really strong arguments to make. I should say that I
didn't come to regret my decision, but the points people made were very
challenging to me and frankly I think very therapeutic for me to really think
about. One issue that came up a lot was the idea of unconditional love for a
child, and when does that unconditional love begin and should we as parents
have any right to choose who we enter into those unconditional love
relationships with. And I remember sitting at my desk and reading, you know,
these papers and feeling like a punch to the gut, but also feeling like it was
very important for me to go through this and to really, you know, see what we
had done clearly and to hear the arguments against it.

GROSS: If fewer handicapped children are born because more women choose to
get the diagnostic tests, the diagnostic tests are getting more precise, and
maybe more women choose to have abortions because of the results that they get
from those tests, are there concerns about how that will affect the lives of
the handicapped children who are born?

Ms. WEIL: Yes. There's a lot of concern that if there are fewer handicapped
children, their lives will be more difficult, that there will be fewer
resources for them, society will make fewer accommodation, that their
handicaps will seem more strange and foreign and more difficult to bear.
There have also been some critics on both sides who wonder what will we think
of the parents who have these children? Will we be sort of looking at them
sideways and wondering why they decided to bring these handicapped kids into
the world?

GROSS: And maybe punishing them for making the decisions? Like, well, `Hey,
you decided to do this, so, you know, now you take care of it.'

Ms. WEIL: Right. That maybe--an even greater burden will be placed on
families instead of society deciding to take on more of that burden and make
the lives of these handicapped kids more comfortable.

GROSS: Well, Elizabeth Weil, thank you very much for talking with us.

Ms. WEIL: Thank you for having me.

GROSS: Elizabeth Weil's article "A Wrongful Birth?" was published in last
Sunday's New York Times magazine.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Sign-off: Fresh Air
TERRY GROSS, host:

(Credits)

GROSS: I'm Terry Gross.

(Soundbite of music)

(Announcements)

GROSS: On the next FRESH AIR, director David Cronenberg. His film, "A
History of Violence," is now out on DVD. Cronenberg's other films include
"The Dead Zone," "The Fly," "Dead Ringers" and "Crash."

I'm Terry Gross. Join us for the next FRESH AIR.
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.

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